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Scleroderma?


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#1 Cheri

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Posted 29 November 2007 - 05:13 PM

Hi,

I'm new - I've been reading postings for about a week or so. I went to the doctor a few weeks ago because I was so tired all the time, and having a lot of aching joints. She took blood tests. One of them came back 1:1280 positive anti-centromere and another was Centromere b - positive 8. I have an appointment with the reumatologist (can't even spell it yet) December 10. The doctor told me not to read about it on the Internet before my appointment, which, of course, I immediately came home and did, and now I'm scared. I have had various tests - one being the pulmonary whatever it is called and I have mild interstitial lung disease. I've noticed in the past two weeks that my finger pads seem really wrinkly and are sore. Is it normal to have the pads on fingers sore? And so soon? I don't see where my skin seems tight although my fingers are puffy in the middle of the night. Also, does anybody know if just by the anti-centromere they can tell if it's limited or diffused scleroderma?

Thank you so much for any help you can provide. December 10th seems like a thousand years away.

Cheri

#2 eah

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Posted 29 November 2007 - 05:58 PM

Cheri,

The diagnosis is not just made by blood work. It is also made by symptoms. Anti-centromere is usually seen in limited. I had the same thing happen to me about 5 years ago. I had the positive anti-centromere blood work. Your rheumatologist will be able to tell you what is going on. Please try not to get yourself upset ahead of time. Everyone is different and everyone does not have every symptom. You may not even have scleroderma at all. If I can offer any advice, it is to try to see a scleroderma specialist. Also, if you do in fact have scleroderma, remember although it is not curable, the symptoms can be managed. Please feel free to e-mail me privately if you have any questions or if you need to talk. The not knowing and waiting are the hardest part. I wish you the best.

EH
ANN

#3 Kim T

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Posted 29 November 2007 - 07:00 PM

Anti-centromere is associated with CREST or limited scleroderma. That's what I have. It can be very mild to more severe. It's more of what I would call a highly annoying illness but I'm not one of the worst cases.
Do you have Raynaud's (white fingers with any cold exposure)? That would probably explain the sores on your fingers. I have no skin involvement so far (8 years). Try not to worry too much and see what your doctor says. CREST is a definite life change but I prefer knowing what's wrong.

Kim

#4 constance

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Posted 29 November 2007 - 07:08 PM

Hi Cheri, Don't be afraid if you can help it. I am new to this site also; new to autoimmune issues and am going through diagnosis now. I have Shortness of Breath with any exertion, a stiffness of my hand and knuckle deformity in two fingers. I have excercise induced systolic hypertension. I had great fatigue the end of last year and then recieved my diagnosis of Hashimotos thyroid disease. I had the antibody for that. I was started on thyroid supplement and many of those symptoms (like fatigue) went away. I was left with sore, stiff, weak muscles and joints (off and on) and the other current symptoms I mentioned above. Cheri, what was the pulmonary test you had that showed interstitial lung disease? I maybe should have it also. I have not even been sent to a Rhuematologist yet and I know he/she is the one I need to see. Be happy you have your appointment on the 10th. I am ,yet again seeing my general doctor this Monday. I won't let it all drop. I will request a referral to a Rheumatologist. I am almost being made to feel like I'm crazy for having so many different symptoms at one time. I am even having a burping problem (some days I burp every half hour all through the day).. From what I understand from my frantic internet readings ; Mild interstitial lung disease is very often controlled by medications for years and years. Be glad you were diagnosed with MILD ID.. I wish I could tell you something really happy and encouraging. Like I said , I am going through the Diagnosis/education process also and learning as I go. I will say that medicine is making unbelieveable breakthroughs now. With the further understanding of DNA and defective gene mapping and stem cell research; so many of all of our problems will be curable in the next many years. Let's hang in there. Let's do it together. Thank you for sharing your story. Please keep us informed and updated on what's going on with you. Try not to be afraid. You aren't going through this alone. Glad you and I found this site..... Connie

#5 Denelle

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Posted 29 November 2007 - 07:29 PM

Cheri -

Waiting is the hardest thing to do when you are concerned about something. I should know... but do your best. I have appts with a new doctor on the same day that you seem your rheumatologist - so best of luck to the both of us! We can wait and not freak out!!!

Good Luck,
Denelle

#6 peanut

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Posted 29 November 2007 - 08:09 PM

Hey Cheri,
Welcome! First of all you should know that freaking out is normal, just don't get yourself too worked up. We've all been there. Diagnosis requires a physical exam, blood tests and other tests like ct scans, pulmonary function tests (pft), biopsy and/or x-rays. Your fingers will be examine as part of the physical exam. I have finger issues but nothing relating to wrinkles - but that doesn't necessarily mean much.

My diagnosis after I was passed from doctor to doctor. My 4th doctor diagnosed me finally via physical exam, blood test and x-ray confirmed by ct scan and pft.

EH does bring up something important... be sure your rheumatologist knows a thing or two about scleroderma. Not every rheumatologist is a scleroderma specialist and being evaluated by a specialist may save you from getting the runaround.

You will be okay!
peanut

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my HMO makes me wear a helmet...

#7 epasen

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Posted 29 November 2007 - 09:21 PM

Cheri,
I know it's really hard, but you should just calm down and not worry untill there's actually something sure to worry about. I hope everything will turn out well in your situation, but we're here for you if you need us :)
Emmi

#8 LisaBulman

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Posted 30 November 2007 - 02:41 AM

Hi Cheri,
Welcome to the forums! I know this is a very scary time for you and it is very easy to get your self into a panic. I think we have all done it at one time or another. Please know that if you are diagnosed with scleroderma it is not the end of the world. It has been 15 years since my diagnosis and I am living life. It may be different than I thought it was going to happen, but I am still living. Once you get over the shock it gets easier to deal with. This disease also affects everyone very differently. I know the 10th seems like an eternity but it will be here before you know it. You should be prepared for your visit with questions for your dr. Try not to read too much, but educate yourself enough so when you have your appointment you will understand what is going on.

Please know that we are all here for you!

Hugs,
Lisa
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#9 debonair susie

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Posted 30 November 2007 - 07:33 AM

Cheri, we've all felt as you do. You've been given very good ideas. The being scared is exactly why your dr didn't want you to go to the internet, as taking in too much too quickly... CAN be overwhelming.

When I got ot the point you now are... scared... I backed away and digested what I had learned. Of course, I'm sure you know that you're not going to have every disease, so please... take one day at a time and keep posting.
There happen to be so many very knowledgeable folks at this particular forum. We have "been there... done that" and hope that we can temper things a bit for you.

Hugs,
Susie
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#10 Sweet

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Posted 30 November 2007 - 10:12 AM

Hi Cheri,

Welcome to the Sclero Forums. You've come to the right place for information, support and all around helping you with the freaking out part. :)

Dec 10th will be here before you know it! Try to relax until then. That's actually pretty quick to get in. I know this is all very overwhelming, but my advice to you is to not worry until there is something to worry about. Easier said than done for sure. Anyway, keep reading posts, ask questions if you think of anyway, and just lead life as normally as you can.
Warm and gentle hugs,

Pamela
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#11 jefa

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Posted 30 November 2007 - 12:07 PM

Everyone has given you excellent advice, so I will give you a big welcome hug and underscore the advice to relax until you have talked to your rheumatologist. It is so easy to imagine everything into something bigger than it is. Please let us know how your appointment on the 10th works out. In the meantime, feel free to read (who is going to stop you, right?) but try not to panic.
Warm wishes,
Jefa

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#12 Cheri

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Posted 30 November 2007 - 03:13 PM

Thank you so much for all your replies - I'm really trying not to worry. I have read things that so many of you seem to be going through - and you are all such an inspiration. With my fingertip thing, it's like I'm losing the fingertip pads and they are sore. I was just wondering if that has happened to anybody else. I have had renaulds (I think that's how it is spelled). It started a long time ago with just one finger and I used to make jokes about it - then about a month ago, all of a sudden it was four fingers on one hand and three on the other. I have been wearing gloves though, which really seems to help a lot and try to keep my fingers off anything cold.

Thanks again, so much - I'll really try not to panic. I am really thankful I found this site.

Cheri

#13 Denelle

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Posted 30 November 2007 - 07:29 PM

Hi again,

I have had Raynaud's since I was in 9th grade. This was 10+ years prior to my diagnosis of Scleroderma. I had no problems until 2 years ago. That was when my fingers got really sore and I developed what I liked to call "calluses" on my fingertips. This made no sense in my mind, because my nails shouldn't have allowed calluses to form. I did some research in the internet and remembered a doctor years earlier mentioning CREST syndrome. I looked that up and realized that so many of those acronyms seemed to fit me. I immediately booked an appointment with my doctor who sent me to a Rheumatologist. Nonetheless, I always carry mittens and hot packs in my purse. I wear them whenever I get cold. My whole hands and feet and sometimes even my nose will turn purple/white when I am cold. At home I have an electric mattress pad, electric blanket, heating pad, warm socks and of course my mittens to ward off attacks. My doctor has also prescribed Revatio for me. This is a drug used to treat pulmonary hypertension, but it is also a vasodilator, which helps prevent attacks. I recommend asking if this prescription may help you. My insurance initially denied coverage for me, but my doctor wrote an letter and quoted studies that showed positive results from the use of this drug.

I hope this helped some. Good luck at your doctors. Also, start writing down your questions that you need answered. And it may be a good idea to bring someone with you to the appt to help interpret the information. If is often so overwhelming that you have trouble taking in and assimilating the information. Another person can help you with that.

Good Luck,
Denelle :)